The First Few Weeks of Life with Down Syndrome

I am not a “seasoned” mother yet. My child with Down syndrome is not quite ten months old. I realize that there is so much left for me and my family in this journey ahead. There is so much that I will learn. However, I feel as though I can offer some advice for those just starting their journey in the world of Down syndrome.

Postpartum life is difficult whether your child has special needs or not. I remember when my first son, Syler, was born, I had a couple of weeks of the baby blues. I did not understand how I could be so happy and yet so sad at the same time. I felt crazy! Thankfully, I never had postpartum depression with either of my children. Along with fluctuating hormones, the postpartum time can bring discomfort in all sorts of ways that you did not expect. Add in a Down syndrome diagnosis, and you may feel out of control.

Arbor was diagnosed with Down syndrome at birth. I had no time to adjust to the diagnosis before he was born, so there was a lot of stress in the first few weeks of Arbor’s life. If you are a brand new mom and happen to be reading this, I hope that these tips I share will provide a bit of help for you.

  1. Take some time alone to process everything. This would apply to both a prenatal and birth diagnosis. In the days following your baby’s birth, people will probably want to visit to snuggle your precious bundle of joy. Whether you have visitors or not is obviously up to you, but be comfortable telling them that you need time alone as a family if that is what you need. I needed family time more than usual and enjoyed visitors, but that may not be best for you during this time. I did most of my processing at night when I was nursing Arbor. It was the only time I was completely alone to think over everything.
  2. Ask for help. I was blessed to have family that was willing to keep my toddler overnight, bring my family meals, buy us baby clothes (Arbor was born a little early and we didn’t have premie clothes), go with me to Arbor’s endless appointments, and watch our kids so that we could go to church. If there is anyone that you trust and is willing to help you, by all means, ask them!
  3. Buy a planner and USE IT! I am very scatter-brained. If something I need to do is not written down, I will forget it. Having a planner that is easy to use (bonus points if it is cute) is essential. Write every appointment down as soon as you make it! I don’t know how many doctor’s appointments Arbor had in his first few months of life, and it is almost stressful to try to remember.
  4. Give grace to those who do not understand. It goes without saying, but most people do not have a child with Down syndrome. Some questions people ask you may seem odd to you, but remember that at one time you may have had the same question.
  5. Build your community. One of the first things I did after googling “Down Syndrome” while I was in the hospital after delivery was find the Down syndrome community on social media. Like it or not, social media is a huge deal these days. Even before we got Arbor’s karyotype test results, I followed a lot of people on Instagram. It is my favorite way of connecting with people since it is very hard for me to get out of the house these days #StayatHomeMomLife. We have a fantastic community near us that offers infant classes that also allow parents to get to know each other, and we hope to get more involved in that after the holiday season.
  6. Remember that this season doesn’t last forever. The first month or two of Arbor’s life made the journey ahead seem daunting. Looking back, it was overwhelming, but it was a short season. You may wonder if it would be easier to pack a suitcase so that you can just live in the doctor’s offices that you will be visiting. Take each day as it comes instead of dwelling on tomorrow. I understand this season will look different for you if your baby has a congenial heart defect.
  7. Read all the books. My “manual” that I keep around is Babies with Down Syndrome. The author’s daughter has Down syndrome, so she speaks not only from research, but from experience. Always let the loudest voice about Down syndrome that you hear be the voice of those who actually know someone with it.




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